Extremely ill newborns often present parents and doctors with very complex medical challenges and difficult ethical issues. Research by the VUB-UGent research group End of Life Care showed in a recent study that infant mortality under the age of one year is preceded in 61% of cases by an end-of-life decision with a possible shortening of life. Such decisions are not taken lightly and are always in the best interests of the child.
Stopping or not starting a potentially life-prolonging treatment occurs in 37% of all deaths of children under 1 year. In addition, in 14% of cases, medication with a possible life-shortening effect was administered and in 10% of all cases medication was administered with the explicit aim of hastening the end of life.
Although decisions to discontinue life-prolonging treatment are the most common, the number of children who die after receiving medication with an explicit intention to shorten their lives is striking. Researcher Laure Dombrecht: "These are most likely critical situations where the intensive care that was started leads to a stable condition of the child, but where a very poor quality of life was expected despite continued optimal care."
Neonatologist Professor Filip Cools of UZ Brussel confirms:
Sometimes we have to conclude that the future for a newborn looks very bleak, and in conversations between the parents and the care team the question is asked whether we can spare the child from all this suffering. It can then be a particularly difficult balancing act between acting in the best interest of the child, while respecting legal and ethical boundaries. Fortunately, the complex domain of palliative care or "comfort care" in newborns has received more and more attention in recent years, both among health care providers and researchers."
These neonatal mortality rates must be interpreted within their overall context. About 66,000 children were born annually in Flanders in 2016-2017; approximately 10,000 of these are admitted to a neonatology department; and ultimately in Flanders only about 230 of them die before the age of 1 year.
The prevalence estimates on end-of-life decisions for newborns in Flanders are comparable with figures from the Netherlands where 63% of deaths before the first birthday are preceded by an end-of-life decision with a possible or explicit life-shortening effect. Researcher Laure Dombrecht: "These figures demonstrate the challenging clinical reality of medical decision-making in extremely ill neonates with a low survival rate or with a strong impact on quality of life."
In the Netherlands, the so-called Groningen protocol has been in existence since 2005, which provides strict guidelines under which the administration of medication with an explicit intention to shorten life in newborns can be tolerated. There is no such guideline in Belgium. Opinions on such a Flemish protocol are divided: "More evaluation and monitoring of the practice can regulate and guide an ethically loaded decision-making process, but at the same time it could limit neonatologists, parents and other stakeholders from making decisions that they believe are justified and are in the best interest of the child", concludes researcher Laure Dombrecht.
Dombrecht, L., et al. (2021) End-of-life decisions in neonates and infants: a population-level mortality follow-back study. BMJ. doi.org/10.1136/archdischild-2021-322108.